My CT results

antcat · January 2012

I was told by my oncologist that I had to complete 3 cycles of chemo before going for a CT scan. I did complete the 3rd cycle of Alimta and talked to my pcp this week. My PCP decided that he would order the CT scan for me and I went yesterday. He called me late yesterday and unfortunately the results were not good. There was progression and the tumors on the bowel (outside of it) got larger. I don't even know how many there are because I don't have the report yet. We talked about surgery but he said I should make a follow up appt with my gyn/onc which I did for next week. I've had 3 prior surgeries which is why I posted a question if anyone has had more than 3 and safely had no problems, but didn't get any answers. Probably, they won't do surgery, I don't know, but I'm not sure how much more chemo I'm going to be able to take. I am currently on Alimta and I found this chemo to be very harsh, as it affected my counts very badly. I have been on and off chemo for the last 5 years and was never anemic, but with this drug I became very anemic so much so that I had to have a blood transfusion 2 weeks ago. My CA 125 has been rising. My oncologist tells me "you are normal". But, as I explained to him, it may be in the normal range, but for me it's not normal. If the chemo was working, then the CA 125 would be going down a little, even by a point. Some of these doctors don't understand that we know our bodies better than a doctor. But, anyway, that's the latest with me. It's really discouraging because I feel like I wasted 3 months with a chemo drug that didn't work at all.

paris11 · January 2012

Antcat - I am so sorry
Hi Antcat, I can feel your frustration. Not knowing what to do regarding treatment is a very difficult situation. Maybe you could request a second opinion. Maybe you can find a surgeon who would remove the tumors. I feel sad for you. Try to go forward. You can find an answer.

Sending you love and prayers,

Connie

kayandok · January 2012

Hi antcat,
I'm sorry to hear that you got bad news on your CT scan. I only come once a week or so, and missed your post on the surgery question. I rarely run into anyone who has had 3 debulks so I find this interesting. When was your original dx and debulk?

My story is on my profile, but I am a 4 plus year survivor and have had 5 surgeries total. 3 debulks, 1 minor surgery to remove the omentum, and one second look. (Actually I had another one in my younger years to remove some endometriosis, but I always forget about that one - so really it is 6 lap surgeries! ) I had my last debulk surgery in August and actually bounced back better than I did on the second debulk. Not sure why. I would not rule out another surgery for myself, as long as my doc would do it, and I had a year or so in between.

I have had a truck load of chemo, but not alimpta. I think Jloe is/was on that one too. Sorry it is not working for you. Is there another option? I certainly hear you on not being able to tolerate much more. I feel the same way!

Warm hugs,
kathleen

garden gal · January 2012

glad to hear from you
I only had one surgery in the beginning hysterectomy, can't imagine what you been through. But I can relate to all the chemo, mine is only 21/2 years with only a 8 month break in the beginning. I too sometimes feel like i wasted time on a drug that hasn't done a darn thing. Won't bother you with all my problems, but I was interested in what you had to say about being on alimta, this is a drug that is being discussed now, not sure now if I want to try this drug. Like you I feel good but can't get my numbers down. I truly hope there is someone else on this board who has had more surgery who can tell you what happened to them or what you could expect. Any info would be great. Hoping your day goes better and you get some good advise. Will be thinking about you. Kathy

TexanByChoice · January 2012

Time for 2nd opinion, maybe?
Sorry you didn't get the results you were hoping for. Bless your heart, I know how fustrating it is to try and do all the right things and still no significant change. You said you had been off and on chemo for five yrs. Have you entertained the thought of seeking a second opinion? Maybe a fresh set of eyes could offer you another form of treatment that they have had more success with. Just a thought. I've already made up my mind that if I have to go through another round, I'll get another opinion...might be the same outcome, but atleast I'll feel better that I have taken proactive measures. Transfusions aren't fun and I hear that if you are on chemo in large dosages or long period of time, it takes a toll on your ability to reproduce r/w cells fast enough, thus anemia. I too had to have one on my first go around of taxol/carbo third treatment. Second time, they reduced my taxol by 1/4 and because of circumstances (my husband was dying) I had to delay my treatments to every 5 weeks instead of 3. Markers came down, but now are climbing again.

Anyway, hang in there. We are all supporting you and wishing the best for you. Keep us posted.

Shirley

Cafewoman53 · January 2012

Good morning
I wish my Dr would do surgery but I think because of the locations of my tumors, one on my adrenal gland and one in a par aortic lymph node she is doing chemo. I would guess that they would try to avoid surgery for us because it might be necessary for bowel obstruction. But if you are strong enough they should at least think about it.
Have you ever had your tumor tested for what chemo would work best? It is called an assay my Dr does not think they are useful she says the way the tumor acts in the lab is different than how it acts in our bodies. I think a lot of people have had good luck with them .
Colleen

Mwee · January 2012

I, too, feel your frustration
I haven't had as many surgeries as you have had to endure, but I've been chemoing for the past 2 years. During that time I've gone through stretches where I felt like not only was I wasting time on a drug that wasn't working, but I was going through all the pain for nothing. The gemzar/cisplatin that I've been doing for the last eight rounds has lowered my numbers and kept me steady. I know what it's like to be doing such harsh chemo, over and over, and it is more than discouraging. I would submit to more surgery if it was an option for me, but it's not. (((HUGS))) Maria

Kaleena · January 2012

Dear AntCat:I am sorry to
Dear AntCat:

I am sorry to hear about your recent news. It seems that you have many questions. You know it is ok to go out of your local treatment center and get a second opinion. I actually got 3 (because the 2nd opinion was still associated with my first one).

With regard to surgeries: Besides my intial hysterectomy (abdominal)surgery, a month later I had to go for an abdominal staging surgery (ended up with an infection and an open wound for 5 weeks); then had another abdominal surgery 4 1/2 years later (2 surgeries at 1 time)[removal of mass and surrounding lymphy nodes; then repair of the LARGE venial hernia from my first surgery. (Before my hysterectomy, I had 3 C-Sections); a laparascopy and a port insertion. So if you look at my stomach, it looks like an anchor. \ *-]

When I was said to have a recurrence in 2009, my old doctor said that it couldn't be surgically removed, wanted me on chemo, and that I would end up with a permanent colostomy. after several months of seeing another local doctor (he did a biopsy which came back positive) and then he put me back with that same doctor, I went 3 hours away for another opinion. He indicated they would be able to do the surgery (no guarantees of course). Had the surgery - removed mass - ended up negative - only found one lymph node with microscopic cells. Because that lymph node was removed, I am on a wait and see approach.

I hope you get some answers soon.

Sending you caring thoughts.

Kathy

antcat · January 2012

Thank you everyone
Thanks for your words of encouragement. I initially had my surgery in 2006 which was a total hystertectomy. Then in 2008 and 2010, the cancer returned and they did a debulking, so even though I may have had 3 surgeries, I think I only had 2 debulkings and I haven't had any surgery in 2 years, so I don't know why doctors don't do what they can to take out as much of the tumor as possible and then let chemo do the job. But, I'm tired of beating my head against a wall. I did change my oncologists, but it seems that all oncologists just follow a standard protocol. I didn't think from the beginning that the Alimta was the right way to go but again, I'm not the doctor. I'm going to see the gyn/onc next week, but I'm not getting my hopes up too high. I guess I'll just have to make a decision as to what I really want to do. I know there's people on this board that's been on chemo for a long time, but some people have had positive results. I'll see. Thank you again for being so kind.

kikz · January 2012

antcat said:
Thank you everyone
Thanks for your words of encouragement. I initially had my surgery in 2006 which was a total hystertectomy. Then in 2008 and 2010, the cancer returned and they did a debulking, so even though I may have had 3 surgeries, I think I only had 2 debulkings and I haven't had any surgery in 2 years, so I don't know why doctors don't do what they can to take out as much of the tumor as possible and then let chemo do the job. But, I'm tired of beating my head against a wall. I did change my oncologists, but it seems that all oncologists just follow a standard protocol. I didn't think from the beginning that the Alimta was the right way to go but again, I'm not the doctor. I'm going to see the gyn/onc next week, but I'm not getting my hopes up too high. I guess I'll just have to make a decision as to what I really want to do. I know there's people on this board that's been on chemo for a long time, but some people have had positive results. I'll see. Thank you again for being so kind.

I am so sorry you
didn't get better news. I was curious to see answers to your question on how many debulking surgeries can be done. I am in my first remission and don't even want to ask my doctors what would happen if the horror returns but I cetainly hope they would try to remove as much as possible again.

Please don't give up. I believe that each of us who fights the fight makes it a little easier for the next sister who has to face this nightmare. My prayers and good thoughts are with you.

Karen

eward · January 2012

antcat said:
Thank you everyone
Thanks for your words of encouragement. I initially had my surgery in 2006 which was a total hystertectomy. Then in 2008 and 2010, the cancer returned and they did a debulking, so even though I may have had 3 surgeries, I think I only had 2 debulkings and I haven't had any surgery in 2 years, so I don't know why doctors don't do what they can to take out as much of the tumor as possible and then let chemo do the job. But, I'm tired of beating my head against a wall. I did change my oncologists, but it seems that all oncologists just follow a standard protocol. I didn't think from the beginning that the Alimta was the right way to go but again, I'm not the doctor. I'm going to see the gyn/onc next week, but I'm not getting my hopes up too high. I guess I'll just have to make a decision as to what I really want to do. I know there's people on this board that's been on chemo for a long time, but some people have had positive results. I'll see. Thank you again for being so kind.

sorry
So sorry you have not had the response from all of us on the board. I know for me, as a daughter of a PPC fighter, with a job and young children, I don't check the boards as often as I would like to and I miss lots of messages. Important messages. You recently were the only one to respond to me about Alimta. Thank you for that.

More importantly, sorry Alimta has not worked for you. My mom has been been in this fight for over 2.5 years. Her last drug was Alimta and her CA125 has climbed from 1900 to over 7000 as of today. She has not been feeling well, either. She has mets in her liver, lungs, lymph nodes, and peritoneum. She has had pleurex catheters in place for quite a while now for when her pleural fluid is on the rise so my dad can drain the fluid and she doesn't have to go to the hospital. Today, her dr put her on weekly taxol and carbo. Taxol was her first drug and she had a reaction on the 2nd infusion way back in 2009, so the dr at the time switched her to taxotere. Now they infused her very slowly to avoid a reaction. I just spoke to her and the infusion went well. Now we just have to wait and hope, hope, hope the weekly taxol/carbo will WORK. And work quick. Her other bloodwork has been good, amazingly. She takes lots of naps, but she still tries to make dinner everyday and only has a housekeeper once per month. My mom is a true fighter. My hope for you is that you have a team of medical professionals who will help you to find meds that will help you. Or surgery if that is necessary. Don't be afraid to get other opinions. My mom has had several professional opinions.

I wish you the best!
Eileen

AnneBehymer · January 2012

I am so sorry I will keep
I am so sorry I will keep you in my prays I have only had one surgery so I am not sure about your question. I just had the hystorectmy and they removed all the could see of the cancer on that surgery. My numbers have now jump they are up 46 points from the lowest number of 6. I will let you know what I find out because I am going to ask how many surgerys can one person have before it is not an option anymore.

Anne

carolenk · January 2012

AnneBehymer said:
I am so sorry I will keep
I am so sorry I will keep you in my prays I have only had one surgery so I am not sure about your question. I just had the hystorectmy and they removed all the could see of the cancer on that surgery. My numbers have now jump they are up 46 points from the lowest number of 6. I will let you know what I find out because I am going to ask how many surgerys can one person have before it is not an option anymore.

Anne

Alimta
Maybe you have already figured this out, Alimta is an anti-folate agent that is usually given in combination with another chemo (like Gemzar). There is a folate binding protein test that could have been done to see if you were among the 80% of OVCA survivors who over-express the folate receptor.

I think most oncologist don't even consider that folate is added to the American food supply. So if you are trying to block folate to stop cancer but the patient is still consuming lots of folate in their diet, does that make sense? I don't have an answer just lots of questions.

LaundryQueen · January 2012

carolenk said:
Alimta
Maybe you have already figured this out, Alimta is an anti-folate agent that is usually given in combination with another chemo (like Gemzar). There is a folate binding protein test that could have been done to see if you were among the 80% of OVCA survivors who over-express the folate receptor.

I think most oncologist don't even consider that folate is added to the American food supply. So if you are trying to block folate to stop cancer but the patient is still consuming lots of folate in their diet, does that make sense? I don't have an answer just lots of questions.

I think most oncologists
I think most oncologists don't even test people to see which chemo will work. None of the oncologists that I have spoken to have any faith in chemosensitivity tests. It all seems like they are following a recipe from a cook book. Sigh...

poopergirl14052 · January 2012

LaundryQueen said:
I think most oncologists
I think most oncologists don't even test people to see which chemo will work. None of the oncologists that I have spoken to have any faith in chemosensitivity tests. It all seems like they are following a recipe from a cook book. Sigh...

I was never on this chemo
so I can't help. I think a second opinion is worth a try. I have only ben one carbo/taxol and that was really bad..but it worked. Were you ever on this...val

Hissy_Fitz · January 2012

Did you ever read Jayne
Did you ever read Jayne Armstrong's blog? She had 7 or 8 surgeries - not all to de-bulk her tumors, but several were.

I think it's still up. Just Google "shopping kharma" and you should have no trouble finding it.

Carlene

carolenk · January 2012

Hissy_Fitz said:
Did you ever read Jayne
Did you ever read Jayne Armstrong's blog? She had 7 or 8 surgeries - not all to de-bulk her tumors, but several were.

I think it's still up. Just Google "shopping kharma" and you should have no trouble finding it.

Carlene

I know you are a fan of Jayne Armstrong, Carlene, and I can understand why you still refer people to her blog. Yes, she fought a good fight and she believed in being brutally honest about the horrors of having/dying from ovarian cancer. You may be surprised to hear that I found Jayne's blog to be the most disturbing of any that I have read from ovarian cancer patients.

The photos of Jayne near the end of her life were the most disturbing of all and I would think twice before recommending Jayne's blog to anyone with ovarian cancer--at the very least, I would warn people about the photos. Your personal philosophy may be "I want to know the truth--the good, the bad and the ugly." I need a little distance from the truth if I am gonna enjoy whatever time I have left.

Reading Jayne's blog did not help me at all; in fact, it was a dose of reality that didn't serve me in any positve way. I really don't want/need to be haunted by images of Jayne's emaciated body. The fact that she had multiple surgeries and still died is NOT encouraging to me--it makes me think she had good insurance and an aggressive gyn/onc.

I don't intend to disparage your personal hero, Carlene, I just thought you might want to warn folks about the graphic nature of the blog when you refer people to Jayne's site.

LaundryQueen · January 2012

carolenk said:
I know you are a fan of Jayne Armstrong, Carlene, and I can understand why you still refer people to her blog. Yes, she fought a good fight and she believed in being brutally honest about the horrors of having/dying from ovarian cancer. You may be surprised to hear that I found Jayne's blog to be the most disturbing of any that I have read from ovarian cancer patients.

The photos of Jayne near the end of her life were the most disturbing of all and I would think twice before recommending Jayne's blog to anyone with ovarian cancer--at the very least, I would warn people about the photos. Your personal philosophy may be "I want to know the truth--the good, the bad and the ugly." I need a little distance from the truth if I am gonna enjoy whatever time I have left.

Reading Jayne's blog did not help me at all; in fact, it was a dose of reality that didn't serve me in any positve way. I really don't want/need to be haunted by images of Jayne's emaciated body. The fact that she had multiple surgeries and still died is NOT encouraging to me--it makes me think she had good insurance and an aggressive gyn/onc.

I don't intend to disparage your personal hero, Carlene, I just thought you might want to warn folks about the graphic nature of the blog when you refer people to Jayne's site.

Jayne's blog
Jayne Armstrong put her own warning on the first page of her blog. I think she knew there might be some people who might find her blog objectionable for several reasons. I'm sure she never intended to disturb anyone. Maybe there would be more money spent for ovarian cancer research if there was more awareness of the devastation of this disease.

I thought it was interesting that Jayne used medicinal marijuana. The jury is out on whether or not marijuana promotes metastasis. I think marijuana has its place in palliative care. But not sure if marijuana is a good idea when pursuing remission.

My CT results

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